Thursday, October 6, 2011

Update, Babble Award, and some SUPER CUTE pictures I can only chalk up to the power of PRAYER!

So where shall I begin?

I think I left off in the post before last about his previous lab work being too high to be able to start the G-CSF, and that we needed to find the source of Tripp's infection and treat it (HAHA) before we could get his white blood cell count down to be able to start this drug.

SO... I mentioned last week that we started him on the one oral antibiotic that was left that we THOUGHT could still treat one type of his pseudomonas. Well, about 3-4 days ago (after he had been on this antibiotic for about 3 days already)... his fever was only getting higher and he was really lethargic and not moving around much at all. He looked awful.

So Dr. Defusco decided that we needed to redraw his blood work- CBC, CMP, and blood cultures.

Dr. D texted our home health nurse, Kati Corso, and she was here the next day to draw his blood.

Let me tell you a little bit about Tripp's nurse, Kati, because I truly believe that God sends the right people into our lives at the right time. Kati works in home health (we are currently the only family she has on the Northshore- she lives in Destrehan) and she also works nights in the PICU at Children's hospital. She is so thoughtful, so selfless, and a DARN good nurse. Since the very first day she came, we fell in love with her, and I think she fell in love with Tripp, too:) Kati has been a true blessing to us by being able to come whenever we need her (I know she would never tell me if she was just plain exhausted from working the night before)... Dr. D or I can text her, and she always makes plans to come out as quick as she can. We are so lucky to have an AWESOME nurse, who also cares!!

I want to tell you, too, that in her spare time (ha), Kati is organizing the "Skip for Tripp" 5K Run/Walk in Destrehan next Saturday, October 15th. You can visit the event page on Facebook HERE. I know she's worked really hard doing this, and I truly appreciate her putting this together for us. We love you, Kati:)

So, his blood work... Kati came out to draw it on Monday. Tripp was SO GOOD for this. It made my heart melt. He barely even cried and just laid on the table so still. Such an angel. And then on Tuesday morning, the one and only Dr. Defusco came to the house again to discuss where we would go from here. We got the blood work results that morning before she got here, so we had a chance to go over them. His white blood cells were through the roof- way higher than last time. This means no G-CSF (at least not any time soon- because G-CSF stimulates white blood cell production- and with such a high amount already, he could have a stroke) and it also means he is obviously fighting an infection. His RED blood cells were VERY low. Which isn't good either- this means he's very anemic. It's no wonder he doesn't want to get up and play or move around- he's as weak as a cat (yes, Grammy, I stole your line:)

Here's what our brains came up with- a blood transfusion. Yay.

I've thought about these before- obviously. But it just didn't seem like a great idea to put him in the hospital and have to find an IV site, while of course risking him catching 45 other things while in the hospital. So it kind of got put on the back-burner. And to be honest, his red blood cells were always "lower" than normal- but never really low enough to need a transfusion... until now.

The only way I would do this, though, is if we could do it here at the house. And the only way we can do it here at the house is if we have a super awesome doctor and a super awesome nurse who would be willing to stay for 4 hours to let the transfusion run. We are pretty lucky that we have both of those, RIGHT? Thank you, Jesus.

So, Dr. D is in the process of checking to make sure we already have a type and match on him so we can get this ball rolling. I, of course, will probably have to sedate him to be able to do this... but if it can give him just a little "boost," then it will be worth it.

The Babble Award.

AKA, The most special honor I've ever received in my whole life.

Our story made the front page of Babble.com:

I was interviewed for this story by one of Babble's writers, Christina Couch. She was so kind. I actually cried on the phone with her. I felt so bad. I had to answer a lot of questions and talk about things that I haven't talked about in a very long time, and she was so sweet and understanding. I am truly honored to have our story posted on the front web page! This is so great for EB Awareness. Thank you again to everyone at Babble.com for making this possible and for all of your kind words in your e-mails to me this week! And of course, to everyone who voted for me:)

Speaking of EB Awareness... I was in tears last night when I received an e-mail from another EB mom. She went on to say about how "down" she had been about her son having EB (the feelings of guilt, hopelessness, etc). But that she had "happened" upon my blog and it had helped her to get through some of her tougher times. She then told me that the other day a stranger came up to HER in public- and mentioned the word "EB"- to HER- before SHE DID! She said the woman smiled at her little boy, she didn't look at him "funny" or it wasn't "awkward." She then said the lady told her that she had read my blog and was aware of EB and what is was.

Tell me this is not...

A. M. A. Z. I. N. G.

This is what I mean about spreading awareness. Things like this are happening because all of YOU are helping us to spread awareness to this horrible disease. If ONE less child gets ridiculed or "stared" at because we can educate people about EB, then it is worth it!

That right there, my friends, puts the biggest smile on my face.

And now to the "super cute pictures that I can only chalk up to the power of PRAYER."

In the past 2 days, Tripp seems to have felt a little bit better. After Dr. D left yesterday, I went back up on his Acyclovir (the anti-viral drug)- so maybe he had that going on again and needed a higher dose? Though I did write a post insinuating that we could use some prayers, too:)... so I definitely think that all of the prayers give us a little bit better days (drugs or no drugs). He's still not getting up to play and is VERY weak, pale, and running fevers. But he has been in a better mood and giving some super cute smiles in the rocking chair! He will probably have the worst day EVER tomorrow because I'm bragging on him, but o well... I couldn't pass up sharing a few pictures!

These are all "smiles" by the way:) Mommy's angel.

And introducing... Our new rocking chair!!!

Our old one had WAY too many miles on it, no butt cushion left, and WD-40 didn't even help the "squeaks." So it was time to upgrade. I LOVE IT. It swivels, glides, and reclines! It's so comfy and has a lot more room for my growing boy:) Well, he's at least growing in length!

"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you. "

Congratulations Courtney...you truly deserved to be honored for your beautiful spirit and for the way your journey is touching the lives of so many!!! When I am rushing around through my busy life,something I see or hear will remind me of you, and I always pause and say a little prayer for you and your beautiful Tripp. I also say a "special" prayer for your wonderful mom to give her strength and wisdom as she selflessly helps you through the day!!! Enjoy the new comfy chair...I am sure you will rock many hours to make ever-lasting memories!!! Thoughts and daily prayers always!!! Marti

That's so great that your story is here to help others know about EB, and I'm so glad that woman didn't treat that baby any different than any other adorable little baby. Praying for you guys always, and hoping that the transfusion helps clear things up!

Yay, I'm so glad you won the Babble award! I'll be praying for you and Tripp that the blood transfusion will be just what he needs to feel better. It's wonderful that Dr. D and your nurse Kati are coming to the house! Lots of love,Laura V.BG, Germany

I am praying EVERYDAY for a mighty miracle in your precious baby boy's life. There is truly not a day that goes by that I do not think of you and Tripp and pray for you both! I hope for many many more great days for you both.

You are amazing the strenth and love you provide for your child is inspiring. I am a devoted follower who thinks of your little boy on a daily basis he's just to darn cute he melts my heart. I am sending prayers your way for that sweet beautiful boy.

THAT IS AWESOME news about EB awareness being spread. I try to post about EB on my FB often to get the word out. I truly believe as well, Courtney. So, here is to pure belief that Tripp is going to receive his miracle.

I think about you and your little boy daily and pray for Tripp's comfort and peace. I firmly believe there is a miracle coming with Tripp's name on it. Congratulations for not only being the best mommy ever but for being recognized for it! You are amazing!

As always, continued prayers for Tripp and your strength. You are so inspirational to all. I pray for many blessings for your family and a miracle too :) May God continue to hold you high and place his healing hands on that precious lil boy!

What a wonderful article, Courtney - I have posted the link on my Facebook page so that my friends might join me in praying for sweet Tripp. His story is one that must be told as the journey toward a cure is found. All of these EB children are miracles and I pray that a cure IS found soon!

Wonderful article. When I get back to blogging again, I will definitely post a link to Tripp's story so others can be praying for you too. You are an amazing Mom and are blessed with a fabulous medical team. BTW, I am blood type O Negative, universal donor, and live near a Red Cross office. If I can help in any way, please let me know.

oh Trip's story has filld me with so much emotion. I am frustrated because my son doesn't count as well as his brothers did, and that he pees on himself at time..your story has just made cry, made me feel horrible. I just want to be as loving and patient as you are...God bless you.

Congrats on the award!! I know this is a personal and private, but I do want to ask... in your last few posts you mentioned thanking your Mom, your faith and other people but there was never a mention to Tripp's dad. After reading the article, I noticed it said that you were recently divorced. I am so sorry to hear that.

I can't even begin to imagine what you go through each day taking care of Tripp, but then to also have to go through a divorce and to not have Tripp's father in the picture. If I may ask, what happened?

You are a true blessing to Tripp and I sincerely wish you the very best, from one mommy to another!

I wish I could just post a big fat picture of the big giant smile I have on my face right now. It is such a privilege to watch God working through you and Tripp. Thank you for letting Him work through you two. It is so inspiring.

I wrote a little something about you and baby tripp on my blog, i hope that you will read it and know that i'm thinking of you all the time. I pray for you and your little one every night.http://thelovelylifeoflana.blogspot.com/

Courtney, I am a mom of two little ones in the Baton Rouge area & I have a mild form of EB myself. Have you looked into using Extracellular Matrix to help with Tripp's healing? It is still experimental, but is being used to help burn patients regrow skin. I know it wouldn't help with the fragility, but maybe it could help with healing to reduce pain? You probably have already heard of this and if so, I'm sorry to repeat it. I pray for you & Tripp regularly. Having EB myself, I cannot tell you how much your story means to me. Doctors didn't even know what I had as a child, so getting more awareness out about EB is so important.

REALLY XLISABENX!!!!! REALLY!?!?!?! I pray for you as obviously you don't know what affect your comment has on people, yet alone a mother is going through so much already with her child! Courtney doesn't need comments like this! Keep it to yourself! Insensitive! Pure insensitive! What a horrible thing to say to someone already going through so much!

Wow. Not only is what that person said disgusting and uncalled for , they are so pathetic they won't even put their real name. They obviously they don't follow your blog because then they would know you have put it in Gods hands. We can only pray for this person since it seems they are the only person that Tripps strength has not touched.

xlisabenx Your comment made my heart sick. You clearly have no sense of compassion or ability to put yourself in someone else's shoes. It is also clear that you are not a parent because if you were you would understand the immense love that Courtney has for Tripp and you would be doing the same things that she is doing...trying to give your child a good quality of the life that God gave him while exploring every option. Please continue to read this blog because reading this blog and seeing the love that people share for this beautiful boy and his family might help your little Grinch heart to grow, but in the meantime if you don't have anything nice to say then don't say anything at all. Courtney, you are an amazing mother and Tripp is a precious and wonderful. Thank you for sharing your journey.

Obviously xlissabenx is cruel and it's sad that they have to expose others to their cruelty. I hope he or she is not a parent because a parent should want to fight for their child's life if they can. A parent's instinct should be to want to do what is best for their child and help reduce any pain they may suffer. As long as you, your team of doctors, and Tripp keep fighting there is hope. The type of comment this person wrote is meant to hurt and make you second guess yourself. I hope it isn't successful and you continue to be an awesome mom to Tripp. Praying that it all works out and the blood transfusion and drug helps with his healing.

Forgive her heart! She must have no idea what she's saying!!! Sweet Mama doing everything you can to provide as much comfort (forgoing yours) as you can for your precious Tripp. Are you able to delete the comment? That doesn't belong on your page since it's a blog for support. Aww. Keep your head up and rest in the prayers that are being lifted up for you and Tripp.

Courtney, never in my life have I felt judged the way I do as a parent. People always have something to say..what they DID, what they WOULD do, what you AREN'T doing.... unfortunately, you and sweet Tripp aren't an exception to the ignorant ass people in the world. Maybe if the person who wrote that hideous comment had someone in this world who loved them HALF as much as you love your son, then they wouldn't have so much hate in their heart! Instead of getting down by what they said.... I would ask them if THEY have donated to finding a cure for EB, ask them if THEY have ever held a suffering loved one in their arms and made the decision to "let them die", furthermore, ask them where THEY got their damn medical degree!!!!! I know it's hard, but don't concentrate on one moron's comment...instead, concentrate on the thousands of people who are supporting you and Tripp, and look forward to seeing pictures of that chubby cheek smile :)

Lisaben how dare you, you faceless coward. Without Courtney that child would not have had a life at all and what courtney is doing is what every mother out there should always do by providing the best for her child. It may not be what you feel is right but that is why you were not chosen to be tripps parent. Courtney was chosen for a reason. Courtney, you are the most amazing person I know. I admire you!

I would just like to point out that you are a complete moron. I really hope that you are reading this. I suppose that it makes you feel as if you are such a big shot when you make someone else feel like crap while you're hiding behind that computer screen of yours.

I certainly hope that you do not have children, since apparently you don't seem to believe in fighting for someone that you love. At least Courtney is fighting for a cure for her son. Unlike you, you callous, heartless, know-nothing fool, she is not a coward. She is actually a very strong individual, and she has been an inspiration to many people for the things that she and Tripp have endured. Personally, I hope to see Tripp grow up to graduate high school and college and go much further in life than you will ever go.

Now, you may think that you are not causing harm by your words, but you would do better to keep your opinions to yourself. It is the words of the closed-minded, bitter, and cynical that are disregarded in society because they are truly of nothing but hatred and negativity. If you came here to spew your hatred on someone who has done nothing to you, then shame on you. I pity you because people like you never go anywhere in life.

I do not hide behind a computer screen, so you may certainly feel free to contact me if you would like to continue to stir your drama. I will gladly tell you where you can shove it.

this comment is to XLISABENX... You have no right to judge or give worthless parenting advice on this blog! If you don't like how Tripp is being cared for then don't read about him better yet unsubscribe from the blog. Courtney is dealing with enough and doesn't need you to add fuel to the fire! It is her right to fight for her baby and I, or should I say 99% of mothers would!

Well we all find you pretty disgusting. It wouldn't matter what Courtney did..if it was Tripp's time then God would have taken him already. You obviously don't have children. As a mother, you do whatever it takes to help your child. You fight until the end.

Courtney...Yours WORDS with sharing your courageous journey through Tripp's wonderful life has touched the hearts of so many!!! Please try and not let the EVIL WORDS FROM THE DEVIL enter into your heart and take root... Stay strong in your FAITH as you always have and God will lead you as always!!! LOVE ALWAYS TRIUMPHS OVER HATE!!!! Prayers for peace for YOU AND YOUR AMAZING FAMILY!!!!!

Cortney, I am so sorry this cowardly person was so mean and uncaring for your situation. I pray for you and Tripp every day and I am amazed at your strength and courage to keep fighting for your little miracle. He is a true blessing and all your love and support for him is what keeps him going and keeps him giving you that wonderful smile he has today. Hugs to you and Tripp. Don't let the negative people out there discourage you or make you feel any different about the wonderful loving life you give Tripp every day. Stay strong.

I always say you reap what you sow and hopefully this hateful and mean-spirited A**hole will get more than their share. Whatever you put out into the universe whether by words or actions will come back to you eventually. Pretty easy to hide behind a fake ID and be a chicken sh*t and say something so cruel. I truly believe that this type of person will get theirs and more than their share threefold. Courtney has more class and grace and LOVE in her little pinky than this coward will ever hope to even come close to. Period the end! Love to you both Courtney and Tripp.Peg